TTC - Could you have severe endometriosis and not realise??

Hello All

This is my first post on BubHub. I wrote it in case my experience can help people who are TTC.

(WARNING – LONG POST!!)

I have just been diagnosed with Stage 4 (Severe) endometriosis.

I only found out I had it because we sought help from a fertility specialist after TTC for more than a year with no BPFs. I’m 34 and have a regular 28-29 day cycle with confirmed ovulation each month. Like many women, I experience a bit of cramping on Day 1 of my period, but it’s not particularly painful and was considered by doctors to be normal. I had been experiencing some minor bowel issues for some time (my daily BM often on the softer side – sorry if TMI!), at random times of the month. Initially I had put this down to stress, due to a highly stressful job, but it continued once I had finished that job and no changes in diet (gluten free, dairy free etc.) seemed to help. It was put down to mild IBS.

After extensive testing over the course of the last few years – countless blood tests, a stool test, 4 x internal ultrasounds, an HSG test, AMH / egg count – that all came back normal, our options were to consider either having a laparoscopy to look for abnormalities/endometriosis or to try IUI or IVF for a few cycles and if that wasn’t successful, then have a laparoscopy to see if there were any issues.

Coincidentally around the same time I was talking with my cousin about TTC as she had experienced issues conceiving (though now has a baby girl), and she told me she had severe endometriosis, and so did all our three aunties on dad’s side of the family. No one in the family had ever mentioned it to me before, probably because it’s not something that people talk about much. I had also been going to an CM/acupuncturist who specialises in fertility, and around the same time, she mentioned that from her observations she thought I could have mild endo. Both of these discussions had planted a seed in my mind that endo could be a possiblity for me. It’s often hereditary – they have found that if someone in your family has it, you are 7-8 times more likely to have it. So I did a lot of research on it before my next FS appointment.

My FS said that if I chose to have a laparoscopy, she would operate and if she found endo she would remove it. I said “but what if it’s quite severe” and she said that if it was too extensive for her, she would stop the operation and refer me on to an highly experienced endo surgeon. I told her that I only wanted to go through surgery once, so as a precaution, I’d rather have an experienced endo surgeon do my laparoscopy, even if it turned out that I didn’t have it or only had it mildly.

So, off I went to one of the leading advanced endo excision surgeons in Brisbane. He did an ultrasound and within about 4 seconds of inserting the probe, he just said, “well, I can tell you that you definitely have endo, and it’s severe”. I was really surprised and said “how can you diagnose it so quickly via ultrasound when 4 others couldn’t see anything?”. He said that he sees these kind of cases every day and he knows what he’s looking for - he can tell by the way organs move around (or in the case of severe endo, don’t move around!), if there are masses of adhesions/nodules, and if there are endometriomas (endometrial cysts) on the ovaries, which in my case he didn’t see luckily.

He said I was lucky that given the severity of my endo, I didn’t have extreme pain. The funny thing with endo is, that a percentage of people with quite severe endo don’t have serious pain. It’s only picked up when they start investigating fertility issues. I’m now booked in for excision surgery next month.

So, if you’re in a similar position to me with unexplained infertility, I really encourage you to read up on endometriosis. Even if you don’t have painful periods, if one or more of the other symptoms ring a bell, or there’s a history of it in your family, consider that it could be a possibility for you and seek a consult with an experienced endo specialist. Even if you don’t have obvious symptoms at present, if you remember symptoms occurring in the past, even as far back as your teens, then it’s worth considering. Endo often starts growing at the onset of puberty thanks to the increased oestrogen and the pill can help to reduce symptoms so it may have been a while since you've had any.

Many women with endo can get pregnant no problem, and some just take a little longer to conceive. But if it’s severe (Stage 3 or 4), then the likelihood of getting pregnant is significantly reduced, even with IUI or IVF. This is due to issues with the anatomical structure of organs (due to being fused together!), and the chemicals/toxins released as a result of the inflammation created by endometriosis which is believed to be detrimental to the survival of eggs, sperm or embryos.

The best option is often laparoscopic excision surgery performed by an expert endometriosis surgeon. After minimally invasive surgery, they have found that the chance of pregnancy increases quite a lot for those with severe endo. My surgeon has had many patients fall pregnant naturally soon after surgery, in fact he supports trying naturally for a while post-surgery when there are no other factors impacting fertility. The chances of successful IUI or IVF post-surgery also increases quite a bit, taking into account age of course.

From my experience, I’m so glad I pushed to see an expert surgeon straight up, even though I didn’t have severe symptoms. At my age (now 34) I wouldn’t have spent so long TTC naturally, or spent a lot of $ on acupuncture before seeing a specialist if I’d suspected endo (acupuncture can be helpful in reducing endo symptoms though).

So, for those of you who are interested, I have listed some of the symptoms of endometriosis (taken from the Endometriosis Care Centre of Australia website) below.

In my case I only had a few - seemingly unrelated - symptoms: non-cyclical mild bowel changes, some pain with periods (not considered severe, though have memories of quite severe pain as a teenager), fatigue (which I put down to weather, stress etc.), an incidence of back/sciatic nerve pain, PMS bloating, a little hard to budge weight gain around the tummy and cyclical acne. Many of these surfaced after coming off the pill (which I now know tends to help reduce endo symptoms). My GPs had never mentioned endo to me, there’s just not a lot of awareness out there, and given I didn’t have severe symptoms, it was probably something they didn’t think was likely.

Changes in bowel, bladder, sexual or menstrual function of a cyclical nature.

Changes in menstrual pain: increasing severity or duration of pain, pain not responding to drugs such as Ponstan or Naprogesic, pain which interferes with normal daily activities or employment.

Bowel symptoms of pain, constipation or diarrhoea at time of the period. Sometimes blood or mucous may be passed from the rectum.

Frequency and pain when passing urine, pain when the bladder is full in the morning. Sometimes blood may be passed in the urine.

Menstrual changes including heavy bleeding, prolonged or shortened periods or periods which stop and start.

Spotting before the period

Premenstrual syndrome including heavy bleeding, prolonged or shortened periods or periods which stop and start.

Tiredness, depression

Pelvic pain

Low back pain

Infertility

Ovulation pain

Pain with sex, felt deep in the pelvis which is worse before and during the period and may alter with change of position.

A similar pain may be felt during pelvic examination when the doctor places pressure behind the uterus.

Some other good and accurate resources (beware there's a lot of myths and incorrect info out there!) I’ve found are:

Hi Gesiet, thanks for sharing your story. I also had unexplained infertility, and mild endometriosis was discovered after a laparoscopy. I didn't realise i had any symptoms however in hindsight i see now that there were a few indicators. I didn't have strong pain with periods, however experienced the cyclical bowel issues and acne. Following my surgery, we were told to try naturally for 3 months before commencing IVF. We went overseas for 6 weeks and i was shocked to find my stomach had completely settled and i didn't get sick once! I ate and drank whatever i wanted and was fine, it was amazing! Upon returning, i still hadn't fallen pregnant, so we started IVF a few months later. We have had four positive pregnancies through IVF and lost two in first trimester miscarriages. I am due to give birth to our second baby in about 2 weeks. It has been a long journey however persistence, asking questions and undergoing many uncomfortable tests/procedures has paid off. We have an amazing 2 1/2 year old and are so excited to meet our new baby. Wishing u all the best in your journey xx

It's amazing how many women are affected by endo - estimated to be 10-15% of all women! And it's amazing how many don't know they have it.

Interesting you had bowel issues too. It's definitely a common symptom. I reckon there would be a lot of women out there who think they have IBS or food intolerances who actually have endo.

It's great to hear that you saw such a difference in symptoms so quickly! My cousin says she could suddenly think much more clearly and had no idea she had been living with a permanent brain fog prior to surgery. I've heard others say they have so much more energy, and they didn't realise how much it was affecting them before they had the surgery. It's scary how much of an impact the inflammation has. Even though I don't think my symptoms are that bad, I wonder if I'll be nicely surprised after the surgery...hopefully!

So happy to hear you've had success with IVF and all the best with the upcoming addition to your family xx

The Following User Says Thank You to GreenFlower For This Useful Post:

I fell pregnant naturally, 12 months after my lap. I had stage 4 endo. It took me over 10 years to be diagnosed (constantly told I had IBS and it was all stress related) and although the laps have really helped my bowel issues, it's definitely still a battle at times.

Unfortunately, now I've got adenomyosis as well and we've been trying unsuccessfully for 3 years for a second bub.

The Following 2 Users Say Thank You to bluehawaii For This Useful Post:

So lovely to hear you had success after your lap bluehawaii! And especially with Stage 4 endo. Yes it's amazing how many people are likely out there thinking its IBS when its actually endo. Great to hear the lap helped with that too.

Sorry to hear you have adenomyosis. They are testing me for that too as part of the lap (getting a sample from the uterus muscle). It's apparently really common for people with endo to have it. I guess essentially it is endo, just in the muscles around the uterus wall. Apparently (from what I've heard/read) this makes conception hard because the muscles can't help push the sperm up towards the fallopian tubes, and the toxins also create a hostile environment for the sperm/egg/embryo. There's no easy treatment. I have heard of people finding success with immune suppression, though don't quote me on that as I'm no expert. Would be interesting to hear from anyone who has adenomyosis and has had success. Wishing you all the best in your journey TTC for baby #2. xx

I suffer from endo, I have had 3 pregnancies and all have been after a lap to remove endo. My last 2 pregnancies I got my bfp 6 weeks after surgery, after trying for 4 years with no luck! We had gone through fertility treatments and a few rounds of ivf, my ivf doctor was happy for me to keep cycling without a lap, I'm so glad I ignored her and insisted on surgery.
Good luck to you and hope your bfp is just around the corner!

The Following User Says Thank You to Just*Ace For This Useful Post:

My 'ibs' is gone since having my endo removed. Found at lap dt fertility investigations , there were signs with period pain there but they'd been pretty good in my 20s with being on pill. Was 35 at diagnosis. Gut has never been so healthy, was able to take up eating things I haven't been able to in yrs. I did ivf a few months after surgery and it worked first go, my fs advised endo patients are some of the best candidates for ivf , compared to other infertility complaints. I went straight to advanced laproscopist, also a fs ( they often go hand in hand) but my hubby is an ob himself so he chose my surgeon, most people don't.

The Following User Says Thank You to Lisau77 For This Useful Post:

I had a lap after my first child as we were unable to get pregnant the 2nd time. They found quite a bit of endo (not sure what stage) I never had any symptoms at all! They said if we didn't get pregnant in the first 3 months after the Lap then we'd need to think about Ivf or iui. After 6 months we were told we had a less than 5% chance to fall pregnant naturally. I took long service leave, did yoga solidly and decided to open a small business. We found out we were pregnant 3 days before opening and 9 months after the lap. DD is now 9 months and still no endo symptoms which they say should reappear after pregnancy.

Pregnant? Got a friend or relative who is pregnant? Overwhelmed? Don't know what you need to do? Go from confusion to clarity with our easy online guides. Helping you get prepared for pregancy, the birth and your new arrival. Great gift idea!